I just got my official diagnosis today and was started on Ursodiol. I have been feeling fatigued for about 13 years and no one could find a reason. In the last 3 years, my liver enzymes went up and I started getting even weirder symptoms. Neurological impairments, heart pain, muscle pain. All sorts.
I saw a note on my most recent labs, under a negative ANA test, that said "possible anti-mitochondrial antibodies". And mentioned it to my PCP. He said yeah we can test for that. So indirectly I found out I had this. Doctors had attributed my high liver enzymes to my gallstones and did not think of this.
Thankfully I am at F0-1. So hopefully no real damage yet. I do have diarrhea after taking the first dose of the Urso! But I hope that will get better.
I've been very uncomfortable, so I'm thankful to have a reason, and hopefully, things will improve now.
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Pawsandchoc
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Welcome! This is a great place to chat when you are new. I am almost a month in and very similar. I also had diarrhoea once or twice in the first week but have settled in now and don’t notice any effects to my daily life from the Urso. I have noticed I have more energy - some of the exhaustion has eased and I think the brain fog is also lessening but it’s early days and that could be in my head!
Did you join the PBC foundation? They have all the up to date info and can provide accurate information and support.
Thank you! Yeah I'm glad I found this site! It's nice to know a bit of what to expect. It was a bit scary not knowing how bad my liver was/is. But a relief that I caught it before a lot of damage was done. And grateful for the Urso even with the diarrhea! lol But good to hear it should be temporary.
I just joined the PBC Foundation. Thank you for letting me know about that!
And glad to hear your energy and brain fog is getting better. That's awesome. My other neuro symptoms have gotten better with B & D vitamins, but my body and brain are still tired.
I’m glad you got diagnosed and now you’re taking Urso. I wish doctors checked AMA sooner. I researched and asked for an AMA test and that’s how I found out I’m positive. Try to exercise even if it’s walking and eat a clean diet. That always helps!😊💓
Yes I wish they did too! They couldn't see past my gallbladder being removed. I will start working on the exercise. I have avoided regular exercise due to it bringing on fatigue. But maybe I can get over that hump. I've been working on my diet as well.
I tried the Whole30. I found Gluten, soy and refined sugar caused a lot of inflammatory issues for me. I eliminated them from my diet and a lot of brain fog went away. Inflammation in joints (I also have RA) also diminished drastically.
For info about the longer term, I was found to have AMA around 2003 and back then URSO was beginning to be prescribed but research results were still uncertain so I declined it. I had no symptoms at all. Just the antibodies. A couple of years later, it was shown that URSO did work for some people but not everyone. Some were responders - others not. As already stated here, URSO doesn't really impact upon symptoms but does limit or maybe even improve blood results. At this stage, I started taking URSO with no side effects, which has kept my test results all within normal bounds. I also remained asymptomatic for many years. Latterly, I do suffer a bit with fatigue and memory problems but that might just be because I'm 70 soon and not the PBC. I think what I want to say is that for many of us, PBC shows just as an anomaly in a blood test and we're otherwise unaffected - and it can stay that way for many years. As many PBCers say, you are more likely to die with PBC than of PBC, so please take heart.
Thank you! I've definitely had fatigue & brain fog for years. I guess there's no real treatment for that part...yet.... But I'm glad to stop any progression. Hopefully! I did better with the Urso today. Not as sick feeling.
I’m a health coach (because of PBC) and have reversed my fibroscan from Stage 2 to Stage 0. I’d be happy to get on a Zoom call with you and share the basics. DM me if you want to schedule a call.
pbc-society.ca/ I would also check here! They have great conferences with lots of great info. And there may be a local support group for you. I am in Chicago, Illinois and we have the Illinois PBCers.
I couldn’t tolerate ursodial at first. I was told to try another manufacturer. There are like 8. I tried 4 and found one that didn’t cause the nausea and diarrhea for me. Now I take smaller doses multiple times a day and am fine.
I have taken Urso for 2+ years. It has brought my liver enzymes down very little. I'm now taking 600 mg daily and will be having labs in October. I cannot tolerate a higher dose of Urso. Diarrhea and abdominal pain is very common for me.
Urso is prescribed by weight and unless you are REALLY tiny 600 mg would not be enough for an adult. Maybe there are tricks to tolerating a higher dose? Have you tried hard core nutritional intervention with the Urso?
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